MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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So I have been trying to sign up on here for what seems like forever! Not sure why I was having problems...maybe it was my old computer.  Anyway, was wondering if anyone can recommend a pediatric melanoma specialist?  Yes, have more questons, but will start with this...Thank you!

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Anonymous's picture
Replies 0


I was diagnosed with Stage IIIa and had a sentinal lymphnode bioopsy in January of this year. One node was positive of the two removed and I decided, after much consideration, to move forward with the option of close monitoring, rather than interferon or full dissection or a trial. I had made this decision based on the arrangement with my doctor for CT scans or MRIs every 4-6 months. I have recently moved and in this province they apparently do not provide scans for Stage IIIa people that do not undergo treatment. I am looking for trials or other research that suggest the value of these scans. If anyone has any information it would be greatly appreciated.

Thank you.  

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Chicks07's picture
Replies 4
Last reply 10/4/2015 - 8:10am
Replies by: Chicks07, Patina, MattF

Brand new to this.  Had a shave biopsy come back melanoma 9 days ago and just 2 days ago had wide excision surgery on my right shin.  Can someone tell me exactly what path report really means?  Like what stage?

Melanoma, level 2, .6mm tumor, T1aNxMx

I fear that I moved to fast and didn't really understand what I even was diagnosed with prior to jumping into surgery.  Maybe should have done MOHs instead? Unwrapped bandages today and my leg looks horrible, wondering what others may have encountered with surgery on the tight areas like a shin.  Don't know how to attach photos here :-)

also no testing to nodes,, this ok?



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Christine.P's picture
Replies 2
Last reply 10/4/2015 - 11:32am

I just found out yesterday that my melanoma has spread to a tumor near my sternum and I will have a biopsy of another tumor in my breast on Tuesday. (My surgeon was able to do the biopsy on my sternum, but wants a radiologist to do the one in my breast because the ultrasound equipment at the hospital is clearer...)

As I have been doing continued research and reading, I find that I am mainly just overwhelmed and haven't been able to find any clear information about the actual drug treatments for my stage. I know everyone is different and I know it depends on whether I have the BRAF gene, etc. but if anyone can simplify the options/standard treatments for 4a, it would be helpful. 

I meet with the medical oncologist for the first time on Monday and I know I will get more information then, but I want to know as much as I can before I go in so I can ask better questions. 

Some stats: 2 primary sites - rght calf (very deep; skin graft; no spread) and left elbow; full axillary dissection; one large positive lymph node with 20 total removed); and now spread to sternum and possibly breast. (MRI and CT scan showed no mets to brain, lungs, or liver). 

Even you can just share your stage 4a stories, it would be helpful. Thank you all for being here for us newbies...

Christine P. 

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Anonymous's picture
Replies 4
Last reply 10/3/2015 - 6:07pm

I read somewhere that Keytruda is not very effective with liver mets compared to mets elsewhere in the body and in fact the ORR is under 20 percent.

I asked my doctor if i could get my liver mets resected but he wanted me to go on Keytruda for a few months first because there is mel in two other places

Now i guess my question is that if I progress in three months time it might well be too late to do anything as the liver mets will be too big.

He also told me that the liver would shut down in about six months without treatment for the liver mets.

All in all very depressing stuff.



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arthurjedi007's picture
Replies 28
Last reply 10/4/2015 - 11:41am

Well it's been another week of no treatment. Like I mentioned the doc would not let me in the trial. He wanted to start the keytruda abraxane last Friday. It is interesting mda has what is called a business center or financials to get such things approved. I was told Friday it would probably take a couple hours and treatment would be Friday or that weekend. Monday I was told 48 hours by the bs and my insurance. Tuesday I was told it was still in medical review. Wednesday the bs said it could be 10 to 15 business days.

The melanoma group although the keytruda was approved they refused to give me a dose to get me by until the combo treatment got approved. They said the doc wants me to do both.

Apparently insurance has their own doc's. One of the latter stages is what they call a peer to peer where the insurance doc talks to your doc. Instead of having to wait weeks I would have thought a good team would get that accelerated to either get it approved or denied. But maybe that's not possible. I dunno but I'm pretty sure it is.

Anyway I'm very upset with the mda melanoma team. At least the group I have with dr Diab. By not even giving me my regular pd1 I had to travel back home missing my very important meeting with the neurosurgeon. It has been 4 weeks overdue since I've got my pd1. So yes the doc correctly saw I was in worse shape than when he first saw me a few weeks before. Plus I lost a lot of money with the nice apartment we had rented and air fare but money is minor issues compared to the important stuff.

Anyway I'm back home. I've requested via their app to reschedule the neurosurgeon appointment and treatment that never happened for the last week of this month. I'm not sure yet if I'm going back a third time or not. So far I've been hosed twice by mda in my opinion. Also my local doc is totally against this treatment the mda doc has changed to. Their refusal to work with me to get just pd1 really upsets me. So I dunno. But my back and legs hurt a lot it has become a problem just trying to walk so I dunno. That wasn't anywhere near this bad before I went to mda. So I dunno. I'm quite depressed, frustrated and upset.


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Debbieamccoy's picture
Replies 2
Last reply 10/2/2015 - 11:56am

My ast doubled to 660 one week after Keytruda . I have mets to liver . Trying to stay positive 

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mom3girlsFL's picture
Replies 2
Last reply 10/3/2015 - 2:17pm
Replies by: mom3girlsFL, jamieth29

Brain mri was clean! Guess i am just dealing with nodes in retroperinoteal area as well as one suspicious lung nodule. Surgery consult was informative-nodes in that area are difficult to get to and high risk of serious complications. He agreed with oncologist to try meds first.

So, just got meds this afternoon, will start tomorrow PHEW!!! I've heard so many comments of people being on taf/mek combo with NO side effects-I WILL BE ONE OF THE RESPONDERS AND NO SIDE EFFECTS!

Thank you to those who responded to my prior post. I have always appreciated the knowledge and support from this forum!


Do not fear tomorrow, God is already there.

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Daisyduke's picture
Replies 4
Last reply 10/2/2015 - 2:03pm


I too am terrified and have been reading a lot of post and gone on a lot of websites trying to learn about all of the new dugs out there.  Do I use the wait and see approach?  Do I try some of the new drugs?


I was first diagnosed with Melanoma that appeared under my nail on my big toe back in 2013.  It was originally diagnosed by my foot doctor as nail fungus ?!?!   and went untreated that way for months.  It was my dermatologist that did a biopsy that found the melanoma.  I had my left gerat toe amputated and my Lumph Nodes checked and they all came back normal.  Now 21/2 years later several uymph Nodes came back with Melanona and like others I am scared to death.


I have read that many people get second opinions, but I am going to the Cancer Treatment Center of America and I feel that I am in the right place.  I don't know if I am Stage 3 or 4 and what Imune Therapy I should try, I am so confused and I just don't want to be sick.  

I just don't like what this is doing to my family, my children are afraid that they won't have me around for their weddings or for my grandchildren.

I have an appointment next  week, what questions do I need to ask my Oncologist to move forward.  

I am so glad that there is a support group out there, I can use any and all support and guidance and I am glad you guys are out there.

Please help!!

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lsmith - MRF's picture
Replies 7
Last reply 10/3/2015 - 3:23pm
Replies by: Anonymous, Linny, Polymath, Ed Williams, tschmith

Hi all,

We are aware of an unsually high amount of spam on the forums today and we're working to fix this issue as quickly as possible.


- Lauren, MRF

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Anonymous's picture
Replies 2
Last reply 10/2/2015 - 11:10pm
Replies by: Anonymous, arthurjedi007

Hello everyone, hope your days are brighter everyday - and may the lord be with each and everyone of you!

I had a WLE and A SLNB in 2007 - however where my WLE is located in the side/back of my thigh - I find it to be very tender and appears to be a bruise - hurts in the one spot that is discolored to the touch, I also have pain in my calf on the same leg for months now, feels like i have a charlie horse in my calf...  this pain in my calf has been going on for several several months.. ive tried drinking more water, stretching, eating banannas, ect.....  going to the Doc in 3 weeks.... but concerned if this could all be realated to the Melanoma i had in 2007 removed.  because i do have a tender spot looks like a bruise where the primary mel was removed and the calf on the same leg will not stop hurting...

any feedback?

thank you, 

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lsmith - MRF's picture
Replies 5
Last reply 10/1/2015 - 8:14pm

Great news! Today the FDA granted approval for the combination of Opdivo (nivolumab) and Yervoy (ipilimumab) for patients with previously untreated advanced melanoma! Read the MRF's statement to learn why this is an important milestone and what this means for the melanoma community:


- Lauren, MRF

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Anonymous's picture
Replies 6
Last reply 10/3/2015 - 2:07pm
Replies by: kylez, DZnDef, scmcelroy, Anonymous, stars

I have melanoma insitu on my nostril.  Everything I read and the couple of doctors i have seen want to do MOHS surgery which has the potential to take off half my nose if not more depending on whether they get clear margins. The unknown of not knowing where the stopping point is is terrifying me.  Maybe to the point I'm willing to not do anything.  Since it is insitu it may take a long time to spread if it and when it does spread - right??  I've heard a little about this Imiquimod cream.  Does anyone know anything about it?  I've heard that it is sometimes used when the potential for disfigurement is a possibility.  It just seems like i'm hearing so many cases of having it and then having surgery and then having it reappear somewhere else.  An endless cycle.  How many people out there are walking around clueless that they may have this and live a fairly long fulfilling life without the constant fear that now invades me.  I think sometimes we are our worst enemies by trying to always be one step ahead of our health.  Don't get me wrong, i have always been proactive in my health care.  But i am just having a heard time believing that by cutting off half my face that my life is going to be so much better.  Depression will surely set in and succomb a portion of my time before i get back on my feet and rise above it.  When talking to people i feel like i am the only one who feels this way.  You say the word cancer and everyones life immediately changes because they choose to try to defeat it.  Quality of life is more important than quantity in my opinion.  People suffer through chemo and all of these treatments that are out for what?? I few extra years on their life.  I've always heard once you cut on someone for cancer it has a greater chance of spreading and there are cases where i honestly believe this.  One minute i am ready for surgery the next no way.  I don't know how to be at peace with either answer.  Anyhow, thanks for listening and GOD be with all of you.


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Anonymous's picture
Replies 6
Last reply 10/1/2015 - 5:26pm
Replies by: tschmith, stars, Anonymous, DZnDef, mrsaxde, Millykamp


I was diagnosted with SSM, staage 1a Clark III Breslow 0.6mm mitosis < 1mm2, I was located in my left clavicle, on the middle of it. I am terrified, I know many people here have been diagnosed with an upper stage, but cancer is not good for an earlier stage neither, it's never good at any stage!!!

I have seen people here who were diagnosted with stage 1 and years later have a recurrence and turn into stage 3 or 4. I am very scared because of that, I know we have new immunotherapy treatments, but what is the outcome or the chances to be NED in case of a recurrence?

Do you have any advice for me...I am really depressed and I am always thinking about that and a possible recurrence!!!

Thanks in advance!



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On Saturday November 14th there is a forum and round table discussion for those that have had melanoma enter their lives in some way. It is being help at OHSU(Oregon Health &Sciences University) in Portland. There is no cost and and option to see it in Bend or stream it on your computer. Here is a link to our webpage to get information and it has a link to register.

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